Tuesday, August 31, 2010

Children's Hospital Feeding Program, Day 1

In the coming days and weeks, I'll be posting more about Livie's daily sessions and schedules, and letting you keep up with her progress. For now, I'm just filling you in on the basics. I'll also be posting pictures of Livie here in the hospital, at home in the play room, at recreational therapy, etc. And if her friend's parents are ok with it, pictures of Livie and her friends.

Yesterday was day one of Olivia's intensive feeding program here in Richmond. We've decided to stay down here for the duration (two months) since we got a spot at the Ronald McDonald house, and because Livie's having anywhere from 3 to 5 different therapy sessions per weekday. We hated to have to wake her up any earlier than we already are to get her to therapy at 8 am. She's not a morning person. No idea where she got that from. Ahem.

So, we drove down Sunday night to get checked in and ready for therapy the next day. I don't know what I was expecting the Ronald McDonald house to be... I guess kind of like a hostel, or something. Just a bed and a crib to sleep in, and maybe some dishes to cook with. I was so wrong! They let us in, got us oriented with their policies, and then gave us the tour- there's a lounge on the main floor, and a library lounge on the third. There's a kid's play room in the basement across from the complimentary laundry room (they even provide detergent. WHAT?!). The playroom has Shel Silverstein illustrations all over the walls, and so many toys for so many age ranges. Some of them haven't even been opened yet. And some really awesome kid books. Everything from Harry Potter, to Ramona, to baby Einstein. I'm so in love with that playroom. They just ask that you sanitize and put back any toys you get out. After that, we were shown into the feeding room just for kids in Olivia's feeding program- can you believe that?! There are only two families, including ours, who are in Livie's program and staying at the Ronald McDonald House, and we're becoming good friends already. So I don't forsee any problems getting time in that room. It's so thoughtful of them to realize that the feeding process is very tenuous and stressful, and removing every possible distraction goes a long way towards producing a productive feeding time. Then we were shown in the fenced in backyard- where they have a tiny real-life house for kids to play in. It even has flower beds in the window sills! That made my heart melt. I can't wait to let Olivia discover that gem.

Our bedroom is nice and comfy, with a soft bed for us, a nice safe crib for Livie, a closet, a ceiling fan, a dresser, and a little desk/vanity. All our stuff fits in there fine, even with all of our feeding supplies and medications. We supposedly share a bathroom with the other people on our floor, but so far the rooms we would share with are not full. As far as I can tell, we only have three or four families staying right now, but they can have up to nine.

There's also a fully stocked kitchen- pots, pans, silverware, etc. Even table linens. And They must have people donating food all the time, because there are several foods in the pantry and fridge that are for general consumption- cans of soup, tupperwares of casserole and sliced up fruit, a cherry cobbler, etc. I cannot believe the generosity of these people. We went and bought some personal frozen meals, like broccoli and cheese sauce, mac and cheese, spinach souffle, etc. Just healthy, frozen, fast meals since we seem to be on the run all the time, and we're not sure how predictable the food supply will be there. We also...drumroll please...bought a teeny tiny backpack (smaller than the one she has from the health care company) that is insulated and small enough for Livie to actually wear around, while she's still pump fed. It was really cheap in the lunchbox section at Walmart. My mom and I have been looking for months for one this small, since she refuses to wear the one she has, and won't crawl or move around if we get her into it. She seemed to really like this one, though. I'm way pumped.

Yesterday was just a baseline day, so Charles and I fed her the first two sessions, and the therapist fed her the last one. We didn't use any special techniques, just fed her as we would a typically-eating child. She did about as well as we expected, if not better. She was actually comfortable with her therapist by the end of the day, which took weeks with her home therapist. She still cries every time we walk through a new door, because she's still petrified of hospitals, but today was noticably better in that regard. I'm so impressed.

There are naprooms available to the program patients, and Liv's had no problems falling asleep in there yet. We change the sheets every time, but we don't have to wash them. There's a rocking chair and a nightlight in there for us to accompany Livie on her sleeping endeavors. I love rocking chairs. I just do.

The main thing for me was putting my baby through something this stressful for two months. But so far, I have much more hope that she can get through this and it will be beneficial to our family, especially to her. I've received whispers from the Spirit that we're doing the right thing, and in a blessing Olivia was told that she would not lose any bit of the personality we've seen her grow and have come to love so much. I have faith that she can do this, and that we can, too.


Chelsea said...

I"m glad that things are looking up! I hope she catches on quickly and you keep having great experiences! Go Livie!

Birches said...

Sounds like a great place. Good luck!

Lizzy Meppen said...

Im so relieved that everything is amazing. Mom and I were just talking about how we were a little worried about everything, but it sounds great! I teared up a little while reading this, it was nice to have a good cry. Love you!

Ben and Ash Rasmussen said...

Oh, that's so relieving to hear! You guys are such troopers. Ben and I are praying for you guys and miss you and hope that everything is going alright. Best wishes!